January 27, 2006 at 3:21 pm #11509SuzanneMember
Have courage. I am sure others have tried to answer you-even a personal message does not work on your post.I have tried several times. Post again. May of us have heard the same prognosis and are still enjoying a quality life well after that time period. A lot of progress has been made in treatment in the past few years. If NY Presbyterian is a center of excellence for the disease, then your dad is taking the best next step. All if us are different so no one can really tell what will work but there are treatments that work for some and he should have some alternatives to choose from. Listen and learn more (contact this organization for their wonderful free infomation package),go to a center of excellence and find a Dr.(preferably at a center of excellence)with lots of experience with RAEB and AML that he feels comfortable with and trusts. Ask Neil for his great list of questions for a Doctor. Hang in there!January 27, 2006 at 9:49 pm #11510
Thanks Suzanne! Who’s Neil?January 27, 2006 at 11:00 pm #11511sugarwhaleMember
We all have had trouble answering you; I kept getting a fatal error message and the window that said the server was down. Oh, well, it appears to be working now. I can give you a few encouraging tips:
1. Go to an outstanding specialist in MDS at a Center for Excellence. If you don’t know where to go, call the MDS 800 number and talk to Audrey. She’s wonderful! She set us up with our wonderful doctor here. She even made a quick appointment for us! We won’t ever forget what she did.
2. Learn everything you possibly can. Read Internet Web sites, get books, and come here to the Forum. Knowledge is your very best weapon.
3. Realize that the statistics are old. They do give a very dismal picture of MDS. It isn’t as bad as that now, since new treatments are available. Ten years ago, your dad knew he would someday die, but didn’t know when. Nothing has changed; he STILL doesn’t know when.
4. Look over past posts on this Forum. Look at the diagnoses, too. You’ll discover that all MDS patients are vastly different from each other. Treatments that work for some of us, don’t work for others. You’ll also discover that sometimes people can live many years with MDS.
5. When you settle in with a fine doctor, ask about the newest treatments. Revlimid is now approved, only for -5q chromosome cases. However, things will soon change with this. Also ask your doctor about Essiac Tea. As I write this, I can just HEAR everybody else groaning. Janice, our fine doctor recommends it. My mom’s transfusions now last much longer and she’s doing much better. Even our FDA says “it can’t hurt.” My mom takes 3 Esiak Caps each day. You can get it in health food stores.
I hope this information helps. My mom was diagnosed in early 2002. She was told she had less than a year to live and “Whadiya expect at your age!?” We dumped this quack and got our fine doctor. My mom is now 88, 4 years older.
Be encouraged, and come to the Forum for help. We care.
~~~ JanetJanuary 28, 2006 at 12:24 am #11512
Sugarwhale: Wow! Thanks for that… it’s very encouraging. I’m printing out your post and giving it to my dad.January 28, 2006 at 12:48 am #11513lynetteMember
Hi Janice and Welcome. My Mom is a patient at New York Presbyterian. In Aug 05, she was dx w/ RAEB-T, then progressed quickly to AML. She participated in a clinical trial and is now in remission. The doctors are great–they know MDS and Leukemia very well–and they gave us hope. They will have options for your Dad. They were much more encouraging than the literature or what you might read on the Internet. Be strong.
LynetteJanuary 28, 2006 at 2:15 am #11514kristykMember
My Mom was diagnosed with RAEB-T this time last year. I too was discouraged when I went home and researched the disease, the survival statistics are dismal to say the least. I found info and hope lurking on this forum. People can and do live with this disease and the variety of treatment options availabe continue to prove promising for many. Your Dad’s overall good health otherwise is also great news. I can’t tell you how exciting it has been to see people on this forum report remissions and progress. My mom was also given the 9-11 month prognosis. She did transform to AML 11/05, however we are passing that awful time frame, and the thing is she is feeling good, pretty stable and the treatment she is doing seems to be working for the moment. There was a time when there was some hesitation when planning for “next christmas” or “next easter” or ” next 4th of July”, but here we are and we are planning, rather more significantly SHE is planning for future..Good Luck. Sounds like your Dad is going to great treatment center.
Lynette..how exciting is your post…yea. I am going to look into that trial, sounds hopeful!
Best to all
KristyJanuary 28, 2006 at 3:39 am #11515seekayMember
I emailed you privately when I also had trouble posting here.
For what it’s worth, I will put out this information here as well, since I haven’t seen it mentioned: orthomolecular medicine, orthomolecular oncology, Gerson therapy. I believe, in my heart, that the key to beating this disease, and other cancers/chronic degenerative diseases, is a combination of detoxifying the body and supernutrifying it by juicing/eating the right foods in clinical (read: large) doses, supplementing with certain vitamins/minerals/phytochemicals, and avoiding toxic substances and potentially cancer-causing foods like animal proteins (including casein in cow’s milk).
Be careful with all drugs, especially chemotherapeutic drugs–they leave residues in the body that are stored in tissues and organs. Charlotte Gerson reports that when chemo patients begin to detoxify, they often re-experience the side effects of chemo again as the tissues release into the detoxified blood stream the stored chemicals (now that the circulatory system can withstand the load as tries to further rid itself of waste and toxic substances).
Liver health is so important for all of us. It seems that when the liver stops functioning optimally, or starts to be compromised, that one of the foundations for cancer is laid in the body. Drugs and chemo may kill viruses and mutant cells, but they do so at the expense of liver health.January 28, 2006 at 3:58 am #11516
Lynette: Who is your mom’s Doctor at NY Presbyterian? Complete remission?… Now THAT’s encouraging and so EXCITING. You know, I might actually get some sleep tonight after seeing your post.
Kristyk: That is exacty what I’m doing now. Everything we planned on doing this summer with my dad, I’m crying about thinking it’s not going to happen. And the thing is, he keeps talking about all these plans because he doesn’t know just how bad it really is. He’s not reading what I am on the internet. All’s he got from the doctor was “it’s treatable with Vidaza and we have to keep a watch on you.” I’ve been doing all the research…not telling him the grim details and looking for hope. Your mom’s news is also encouraging. The decitibine is working?
Seekay: I’ve been googling all the things you told me to. That’s also very encouraging. I’m excited that there’s other options besides relying on chemo. Thank you.January 28, 2006 at 7:05 am #11517pattiMember
I posted a note to you under the “forum” post. Duh. Didn’t look at this one first. I have to second what seekay said. My MIL refuses to do all chemo for the reasons she listed. Mom is working with an integrative medicine doctor (cancer naturapath) that coordinates with her regular doctor on any treatments she wants to try with mom. My MIL recently started acupuncture. She also takes essiac tea (so do I – for other reasons) and a number of other supplements to stregthen her blood/body. Whole foods are important.
Whatever you guys decide is best for your dad, there is hope. I’m glad you’ll sleep tonight.
pattiJanuary 28, 2006 at 5:54 pm #11518lynetteMember
Mom’s doctor is Eric Feldman. He is excellent.
Very knowledgeable in Leukemia and MDS. He gave my Mom several options, which gave us hope.
Mom is on a maintenance protocol presently. She recieves chemo every 4 -5 weeks(outpatient 2 days at NYP). Yesterday, we were at NYP and we met another woman w/ MDS who has been in remission for nearly a year after being on the same clinical trial. There is hope!!
LynetteJanuary 28, 2006 at 9:22 pm #11519
Lynette: Oh, thank you! That’s the same doctor we are taking my father to see on Monday! I’m so excited now that I heard such good news from you. The same doctor! Wow!
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